Nicole,
It is possible to have a big AN with absolutely no symptoms. The younger you are, the more it holds true. I was diagnosed with a huge AN at the age of 25. Of course, it was an accidental finding as I had no headaches, tinnitis and perfect (not just pretty good) hearing and speech discrimination. It sure changed after surgery #1! I had to have another surgery on it done last year and can tell you that, generally, smaller tumors carry less risk and less damage and more treatment options with them and that is not just because the technology has improved.
What is important to know especially for NF2s or potential NF2s is that small tumors can be removed but hearing can be preserved. The surgeons just recently started to do it, and there is no guarantees but this option was not available in 1978 when your father had surgery or 1988 when I had my first surgery mostly because the tumors at their discovery time were so large since MRI with contrast was not available. So the surgeons did not have a lot of years and cases to practice.
As far as kids go, I really understand your concern because I am also a potential NF2. My children will be screened for tumors. There is now also prenatal and genetic testing available for NF2 which was not in 1995 when I had my second child. There is also a drug for NF2 in trials now. In fact, there are a lot of new developments in the field, so there is every reason to be optimistic.
I hope you don't have any ANs or other tumors! Hope all is well!
Eve
